The Year of Zinc

I’ve not blogged in ages. I keep reflecting, but it’s stored in hidden word documents on my laptop – sometimes making an appearance at a conference, or on my Facebook – in the safety of friends and not just the internet-public.

But I’ve been thinking about getting to 30. Alive. I really can’t believe it.

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On the periodic table 30  is the element Zinc. Roughly one third of all metallic zinc produced today is used in a process known as galvanization. During galvanization, an object that is subject to corrosion, such as an iron nail, is given a protective coating of zinc. I like the idea that my new decade is started with the year of Zinc: an element that is most useful in trying to stop corrosion.

5 years ago, an event happened that changed my life. Some of you where there, and others have followed the progress reports. But, honestly, i think it’ll take a full ten years for me to understand the impact and outcome of that one event.

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Life in many ways is like a paint by numbers book, where you can colour, one tiny bit at a time but within invisible lines. The whole picture emerges much later. Perhaps Steve Jobs said it best:

“You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever.”

A decade ago, today, if you had asked me today if my life would turn out the way it has done — I wouldn’t have been able to answer that question. In many ways, life has been so much better than I ever really thought it would be!
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Getting to 30 isn’t really big news, but it’s a biggie for me, and ANY of my friends will vouch for me – I never thought I would make it to here. I thought this at high-school. I guess living in abject poverty makes you feel like this – like there’s no future. And this was even before I fell sick. But then when I did fall sick, I would look at what was happening to me and how i felt and thought for sure I wouldn’t be alive by now. At times, I actually didn’t want to live. Like, I just felt like I couldn’t live with this kind of pain – for the rest of my life – without someone understanding what this experience was doing to me with me.

So, I’m really grateful to be getting here.

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Despite this being kinda big news for me, i’m surprisingly anxious about it all too. I still feel 21 in my head. I still get I.D’d for booze at bars & M&S when buying BucksFizz, and if I’m really trying it on, I can still get Teen cinema tickets at the local Odeon.
My life is that of an 18 year olds. I moved back home, have no kids, no pension, basically a few $ in savings, the worst credit history – ever. I’m still a student, albeit I prefer researcher now (PhD). But getting really sick in my 20’s kind of funked things up a bit. I lost time for making and meeting people and things. I lost confidence, and money and I spent a whole lot of it when I got it — YOLOing or trying to find cures for my fatigue (all didn’t work BTW).
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By societies standards, I’m not a success. And I can feel it. I should have *done more* by now. People my age are consultants and own houses, and head-teachers and more. And it’s hard not to compare yourself. But in my own standards (and I think this is what matters) I’m relatively happy with where I am right now.
I mean, I am alive. I do think about that a lot.
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Confronting mortality makes you ask some fundamental questions of yourself and your relationships. It makes you a lot more honest with yourself. It forces you to say no more often, for you know the fleeting nature of life, the minuscule time we have on the planet and what matters is how we choose to spend it. And how you choose to act aswell.
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But 30 years is a long time to have witnessed change and fragility.  Over the past 5 years of ‘illness’, I realised that BEING alive and FEELING alive are 2 different things. And what I’ve learnt over 30 years is what Oprah’s words from her Golden Globes speech encapsulated:

“What I know for sure is that speaking your truth is the most powerful tool you have.”

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I recently read Dr Rod Kersh’s response to Henry Marsh’s guardian article  on the treatment by the legal system and the media, of a transplant surgeon scaring in his initials into patients livers.

And it got me thinking about empathy, and dignity, and teams and Zinc. Rod is one of the most compassionate (& innovative) doctors I know.  I first met him like 5 years ago. It was my 3rd time ever at a hospital appointment. I still hadn’t learnt how to “behave” in these situations (i think i still struggle with what to say and what not to mention even now).  But I still remember our first clinic with clarity, exact words and phrases. He told me how he was going to treat/talk to me (like an equal).  And it properly threw me. I thought about it for weeks afterwards. It was a weird thing to say. But it properly made me feel like I could trust him, that I (my life) was important. This phrase was further backed up by his actions, because in trying to describe what was happening to me, i described it more in how these symptoms was really hindering my life. And he was super intrigued by this. He’s the only doctor (except the ENT doctor this week who was genuinely concerned with my massive hearing loss and my quality of life/future) who seemed to gauge what was important to me. I noticed that when people didn’t hear me out, it made me feel more desperate. (That’s not to say everyone else I see or have seen don’t care… because that’s simply not true at all, but there’s a difference in acknowledging).

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He, and a few of my HCP, inspired me to be the best healthcare professional I could be. I subconsciously learnt what was good care and what wasn’t as good as that. And now everytime I am with a patient, I remember what is important to me when I am in this system. And the differences in actions and languages. And I want to make sure people feel seen and heard. Feel like whatever they’re telling me that is bothering them in their lives, that it matters. That they matter. Despite whatever is happening. Because often people just want to be heard.

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Many forget that it’s a rare privilege to find something you care about so deeply and be able to make it part of your life. For me, I realize that it makes sense that 30 is Zinc.  I am so endlessly grateful. These years have gifted me experiences, skills, lessons, and friendships. I would not be me without them because these people: my friends, teams, colleagues, working together – have acted like Zinc. 

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They have provided me with a coating, that has helped to ease the corrosion of life (from art, to work, to learning, to sickness and more). And in doing so have taught me how to be Zinc too.

You will never regret offering dignity to others.

We rarely get into trouble because we overdo our sense of justice and fairness. Not just us, but where we work, the others we influence. Organizations and governments are nothing but people, and every day we get a chance to become better versions of ourselves.

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And yet… in the moments when we think no one is looking, when the stakes are high, we can forget. It’s worth remembering that justice and dignity aren’t only offered on behalf of others.

Offering people the chance to be treated the way we’d like to be treated benefits us too. It goes around.

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The false scarcity is this: we believe that shutting out others, keeping them out of our orbit, our country, our competitive space—that this somehow makes things more easier for us.

But today, value isn’t created by filling a slot, it’s created by connection. By the combinations created by people. By the magic that comes from diversity of opinion, background and motivation. Connection leads to ideas, to solutions, to breakthroughs.

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The false scarcity stated as, “I don’t have enough, you can’t have any,” is more truthfully, “together, we can create something better.”

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And going forwards in setting the tone to my next decade is just that. To be Zinc: to help, share, collaborate and support. To be compassionate and empathetic.  I will do whatever it takes.

I just like to take this moment to say thank you to everyone in my life who have gotten me here too (from everything). I love y’all! Keep being awesome!

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gifts and choices

In my procrastination of trying to write up my methods section for RF2 (my next PhD barrier) I came across Jeff Bezos’s commencement speech from 2010. (Not super sure how I reached  it in my click-a-thon).

But I found it to be incredibly important.

After my life got shook up when I fell sick, I had to change how I worked, how I lived to move around shitty symptoms that really brought me down. It made me question everything I was, and who I am, and where I was going.  It hit me when I was on my way up in the intermediate art-world, and brought me tumbling back down to the ground, really hard – really unprepared for this new world – injured in so many different ways. Every time I looked at myself and my life, it was like looking at a mirror that had been cracked a bunch of times. I’m still not over it all.

At times, I feel more broken than I ever was, but I feel at different times and in different areas I have gained so much more. One area is in personal growth. Whilst I’m still trying and learning to be a better person (and sometimes failing,) I realized that I WANTED to REALLY be a better person. I had no idea how I was being supported years before I fell sick, and even still to this day, where I felt incredibly stupid for taking it all for granted.

Some days I literally feel like I’m dying, and with this came a fear of what would be my “legacy” (this is such a loaded and over-the-top word). But what do I want to leave behind? What do I want my work to be? We spend so much of our time at work, doing work – of all kinds – that it makes sense that we should try and enjoy and make the world a better place than what we found it in.  This doesn’t have to be a grandios project – we know it often only has to be the smallest thing that can make the greatest of differences. Listening.  Offering to help someone out.  Introducing yourself.  Donating to charity. To giving someone a helping hand up. The list is endless.

Bezos’s speech really resonated with me, and I think some of his words are good markers. Especially when the road is rough, and rocky, and risky and dark.  So I hope these bits I’ve chopped up here – help you.

In 1986, Jeff Bezos graduated from Princeton with a degree in computer science. In 1994, he founded Amazon.com. He was literally selling books from his garage. In 2010, he went back to Princeton to address the graduating class about the difference between gifts and choices — a profound reflection on reconciling being smart with being kind, an illusory choice many “successful” people feel like they have to make.

Cleverness is a gift, kindness is a choice. Gifts are easy — they’re given after all. Choices can be hard. You can seduce yourself with your gifts if you’re not careful, and if you do, it’ll probably be to the detriment of your choices.

Tomorrow, in a very real sense, your life — the life you author from scratch on your own — begins.

How will you use your gifts? What choices will you make?

Will inertia be your guide, or will you follow your passions?

Will you follow dogma, or will you be original?

Will you choose a life of ease, or a life of service and adventure?

Will you wilt under criticism, or will you follow your convictions?

Will you bluff it out when you’re wrong, or will you apologize?

Will you guard your heart against rejection, or will you act when you fall in love?

Will you play it safe, or will you be a little bit swashbuckling?

When it’s tough, will you give up, or will you be relentless?

Will you be a cynic, or will you be a builder?

Will you be clever at the expense of others, or will you be kind?

Expect anything worthwhile to take a lot of time

Yesterday I went to the Drawing Matters Symposium in York. It was a day of inspiring talks and presentations, all grappling with drawing and its pros and cons. I even met a couple of healthcare professionals (a nurse & a physio) using drawing in their PHDs – as a critical tool too, not just a “wellbeing” tool*

There was a particularly interesting talk from an educator about drawings role in primary education, and how a lack of teachers understanding of drawing and time to do it/teach it (all documented in Ofsted reviews every 3 years) is affecting how people later on in life construct and evaluate knowledge. This then, of course, systemically affects every area we work in – from government policies, to leadership, to how things are designed.

They also showed how drawing also helps bilingual kids learn english. So drawing can help bridge across two different languages, two different paradigms. Enhance collaboration and share practices!

But the knowledge thing got me thinking about the healthcare system.

I’ve been trying to make things to help showcase people’s work within radiotherapy & beyond and I’ve been *secretly* developing  a framework/workshops to teach healthcare students (maybe even staff) to be and think creatively.
The workshops are designed to be facilitate hands-on activities and discussion designed to build 4 essential creative muscles:

  1. Seeing connections between disparate concepts
  2. Developing an openness to new ideas
  3. Building resilience through experimentation
  4. Authentic reflection

These 4 things goes beyond what most people think of when we say creativity (no, it’s not just drawing, and it’s not just being “different”). In business, the creative mindset is highly sought-after because in this time of incredible uncertainty and rapid change, we need agile thinkers who can recognize patterns and interesting adjacencies, who naturally come up with person centred solutions not rigid-1-fits all master plans, and who are comfortable conducting rapid experiments to learn quickly. But it’s not as much appreciated  in healthcare, despite needing the same kind of things as described above.

But alas,  both healthcare and creativity is complicated.

For years, researchers have studied the “bias against creativity” in the workplace. University of Pennsylvania researchers coined this phrase for the tendency of creative ideas – and the people who espouse them – to be systematically diminished, disparaged, and discredited. This is interesting stuff. I’ve personally experienced it at school, across many places I’ve worked, including within the healthcare system too.

In recent work from Stanford Institute for Economic Policy Research, economists took a novel approach to innovation research by matching tax data to patent grants and applications for almost two decades in the US. They found that children of parents in the top 1% of the income distribution were “ten times more likely to become inventors than those in the bottom 50%.” This is significant, but perhaps not that surprising. The fact that you’re more likely to be successful if your parents have money isn’t the classical narrative of the American dream, but we know it’s true. This data is reproduced across the UK too.

The real surprise in the research was that invention was not correlated with creative ability. Instead, the degree of successful invention was more closely tied to environmental factors shaped by race, class and gender. The conditions children were exposed to at a young age in their neighborhoods and schools were the dominant factor in predicting future success in innovation. In other words, if children didn’t see members of their family or community engaging in non-traditional, innovative pursuits, the financial barriers related to access to opportunity were virtually impossible to beat. It didn’t matter how naturally talented someone was if they had nothing to model.

This makes me think back to the healthcare system and the transformational leadership role and HCP ability to enact change – whatever band/level/experience they have.

“Creativity” may not be the magic bullet – but creative people are. We know that intentionally or not, we are teaching the next generation how to be good foot soldiers, but not independent thinkers. More confoundingly, we know that the things we design (whether policies, products, systems, services, pathways, leaflets, etc) we will use in the future to communicate and convene, work and drive and govern will be built by a cosseted minority who have great access, but may not have the greatest ideas. And even if they do, they will not represent the diversity that they could have.

The experience of engaging in the creative process is profoundly transformative for people, especially young people. Moreover, it’s something where each of us can have outsized impact, just by simply being present.

So how do we do this?

First step: embed it back into education and learning.

Organization design – the attempt to structure systems to produce the outcomes we want – has been an established field for decades and healthcare is an amazing example of this. But here’s the thing – if you step back a bit, putting the two words “organization” and “design” next to each other is actually quite contradictory — the historical rigidity of a typical organization, next to the inherent complexity of the humans in that system, combined with the fluidity of design.

The healthcare paradigm is a tricky thing to navigate. It’s so ensteeped and rigid in empirical  data and conservative methods that it’s hard to move things. Each coupling reveals a tension between chaos and structure; linearity and the non-linear; closed and open systems.  Teaching people to be flexible and open – and fun – will show them their potential and feel more confident is being more critical and open about their world and collaboration around them.

Step 2: We need to Challenge the world around us.

At the 99U Conference, Liz Jackson, founder of the Inclusive Fashion + Design Collective said: “You never see a person on a cycling sign. You see one on a wheelchair sign. You’re saying you can’t use that object unless you are that person,” as she strode the stage with the aid of a cane. “We are disabled not by our bodies but by the world around us. It is a social construct. Disability is nothing more than a brand, the world’s ugliest brand.”

The stuff we ignore, or don’t try and change, creates our world – makes it harder for us to do our jobs, our lives and our patients lives. So by giving people the tools to critically think, to be open, to try stuff, we can literally make a difference. Equally, to repress what makes us unique is to artificially constrain all the potential we have to offer. 

Step 3: Learning different ways of thinking to see from different perspectives

This is where a creative education works. Sometimes we all need to step back—be an artist or a healthcare manager— to find the most appropriate methods or  solutions for the problems. You don’t have to do everything yourself, and it doesn’t always have to be a questionnaire or RCT.   Equally, we need to  increase awareness of our biases (which we have MANY in healthcare) and begin to advocate for change, Norregaard recommends creating a space with your team where it’s okay to talk through our biases.

Step 4: Believe in the learning loop.

We teach reflection well in healthcare, but I’d argue not in a way that’s super conducive to working life and transformation. We know that hospital Trusts that are transparent and have an open culture to mistakes, make less big mistakes overall, and have higher quality care outcomes. This isn’t by mistake. Reflecting upon what you do, enables you to work out where things can be better. But the trick is about making reflection natural, critical, authentic – actually empowering and enjoyable and  not like a chore, it’s tick box excerise for just your license. Creative thinking does this.

 

However, even with all of this – we know culture doesn’t change over night and there will always be people high-up that can not see the benefit in such things. Expect anything worthwhile to take a lot of time, but in the meantime – the artist in me has taught me that if you don’t or can’t get a seat at the table – just bring a folding chair.

Having ideals is like having a compass that always points to your heart instead of your brain. If anybody wants to keep creating they have to be about change. Likewise, if anybody wants to be about change, they need to create.

 

 

(*side note: I believe the arts are incredibly important in theraputics however that’s a whole different debate). 

How change happens: One person. One moment at a time: Surprises from doing some Labour Canvassing.

It’s been months since I last wrote a post. Mostly because I’ve been sick, and mostly because PhD work, man. It’s never ending.

But the uncertainties that lie ahead for me, are bigger than ever for us as a country with the snap General Election in motion.

In 2015, you might remember me being super pro-Labour, super-dooper pro Ed Miliband for Labour Leader. I posted loads online, but I was deep in my radiotherapy & oncology studies. I was working every hour sent on clinical placement, and then on academic work & freelance stuff just to try and make ends meet because the NHS Bursary wasn’t ever enough to live-off anyways.

I didn’t go out and canvas or post leaflets, I didn’t have the time. But I didn’t even think we needed to do it anyways. So I just retweeted support. I had a proper echo chamber around me (though I learnt I had many Tory & UKIP voting friends… ), that I felt like the winds changed in our favour towards the end of the election campaign. I went to my polling station to vote – and saw people there voting for the first time in years.  I assumed they’d all be for Labour – because, why not? It was an obvious choice. I felt like Ed could actually win this thing.

Then the results started to come in that night.  I laid in bed, watching some sort of tragic accident,  Snap-chatting friends – our sad faces, willing that it will change, it’s only 1am anyways? I went to sleep as I had an event to draw the next day wicked early.

I woke up at 6:30am to “sorry smizz” texts from friends who knew I was really passionate about it all, & saw on the TV the Tory Majority result. I just starred it out. My mom came upstairs and tried to take the mess out of me (we’re always winding each other up) by saying, “HA! Labour lost…”

And something came over me. I’ve never had this reaction to anything like this before. But I got chocked up. I stuttered that, “You don’t know what’s going to happen… PEOPLE ARE GOING TO DIE.”

We stared each other out, shocked at my uncharacteristic emotional outburst to – an election of all things. My mom immediately knew this was not something to laugh about. She tried to comfort me by saying it “probably won’t affect us…” But I knew it would, and that wasn’t the point. What about the people it would REALLY affect, badly?

But I was right. People have been, and ARE DYING because of this Tory government.

Our Death rates in 2015 reached their highest level for five years. https://www.theguardian.com/society/2017/feb/17/health-cuts-most-likely-cause-major-rise-mortality-study-claims?CMP=Share_iOSApp_Other 

Millions of more children are now living in poverty (despite David Cameron changing the definition of Poverty to hide the even more 1000’s of kids in poverty from statistics)  https://www.jrf.org.uk/press/ifs-poverty-forecasts-budget-needs-support-families

Social Inequality is one of the biggest causes of disease and under-productivity. It poisons our communities and changes peoples lives, forever, mostly for the worst.  Over the past 6 years, I’ve seen young peoples futures get smaller & smaller, a united kingdom now fighting within itself into a more divided nation. A rhetoric that is neither good for EU leavers or remain believers. I’ve felt the difference 6 years of Tory ideology has made on the NHS, from both a staff member and a patient, and I know that it’ll get worse if the Tories stay in power.

I’ve been burnt by too many election outcomes over the past few years: 2015 GE, EU Referendum & USA’s presidential election… but i decided that maybe it hurt so much, because I hadn’t done *anything* to help change these outcomes?

I realized that I couldn’t just sit and share and write think-pieces about these policies and about why voting Labour is important, again. So when Ed Miliband emailed all the Labour Party members in the area, I knew I wanted to help and I emailed back.

I originally just thought I’d hand out some leaflets. I could do it when it suited me,  work it around work, and I wouldn’t have to talk to anyone.  Because if anyone who knows me, knows, I get proper socially inept asking strangers stuff & especially calling people up on the phone.

But Ed called up, and we chatted & he sort of encouraged me to come along to a canvassing event. And to be honest, I thought it was going to be wicked hard but the team was amazing and kind. They let me shadow them until I felt like I could do it alone.

The groups of people that come together to canvas cover all kinds of backgrounds and ages of people – from young to old! All super interesting, smart, funny and kind, with incredible stories of their own. I’ve met some great people on the trail, even catching a drink and becoming Facebook friends with them.

I’m still nervous every time I go out and do it, but it’s kind of exhilarating! And feels fun. Even when you do it in the rain.  I’ve learnt about how we do canvasing, using data, and how we develop it forward. It’s fascinating stuff to see it play out on a local level, as well as national level. I feel like I’ve also gained and developed some skills, which I know I can take to different parts of the multiple jobs and roles I do in real life.

But the most rewarding part – is getting to know your own community. I’ve lived in Woodlands pretty much all of my life, and when I was handing out leaflets — I had to google map where some roads where!

It reminds me a bit of my clinical work, where you’d do a first day chat with a patient about their treatment.  It’s these opportunities that allow my patients get to offload their concerns and worries, or ask questions. And it’s often the first time they feel like they can ask a HCP these things before, or that they’ll be listened too. And it helps enable them to have a better care experience.

Canvassing is a bit like this, sometimes you get someone who has just been waiting to tell someone who will listen their issues. And in listening, and being kind, some of the work is already done for you. Its therapeutic for them (after all, most people just want to be heard), and you can help to signpost them in the right way. That just feels really rewarding, but it’s also hard – just like clinical work – hearing people’s stories of suffering and wanting to do the very best for them – but they’ve got to be part of that equation/solution too.

It’s also how Obama was able to win vital seats in 2008, because of people knocking on other peoples doors. I don’t think we can underestimate the power of listening and hearing in real life.

I’ve now mailed, 100’s and 100’s of leaflets and letters. And whilst I do it, people washing their cars and walking dogs, and kids on bikes will ask questions, and everyone is really friendly.  It feels good to be part of this community in a way I’ve never seen before.

Additionally, I’ve proper increased my steps – which is a pro for a job where I’m sat down reading, drawing, writing and interviewing mostly. So going canvassing is good for general health & fitness too! What a winner? 😉

Over all, nationally, it’s hard to work against our rabid right-wing mainstream media. Journalists are meant to function like fire alarms, as in, it’s better to go off even if it’s just a candle. Whereas a lot of our publications make millions every year, & often not pay tax, to tell people the smoke they’re smelling isn’t smoke.

If that transparency and accountability is lacking, it’s our role to help people get the right information. And I feel like, regardless of the outcome, we’ve been part of something special and urgent.

There’s still a few weeks left of the campaign trail – I would urge anyone who is thinking about it – to get in touch with their local Labour Party (or whatever party) & get involved. Even if it’s just 1 afternoon (I’ve only done 6 canvassing events & a bunch of leaflet dropping) but it feels good to be part of something bigger than myself.

As Margaret Mead, an American cultural anthropologist, said:  “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”  

And i think that sums it all up nicely.

Whatever happens after the GE, I feel even more encouraged to help more at local levels too. What an experience to have.

*Hope you guys will Vote Labour to save our NHS, schools, workers rights, the internet, democracy and even more that’s at stake in this election.*

Shout out to Ed Miliband and his team, and Doncaster councillors and other canvassers who are awesome.

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Work Hard & Be Kind

My productivity clock is weird. I can’t do anything of great magnitude in the morning. In the mornings I can’t write good essays, I find it hard to read and interpret big data-sets or new complex ideas and theories, I can’t really code websites, I find it hard to hold a proper conversation for at least an 1.5 hours after I’ve gotten up. So I leave my admin tasks to the morning and I usually distract myself on twitter. I’ll attempt my work, but will probably have to re-write it later.

By the afternoon, I feel my cogs working more smoothly. I can read those research papers and books with the understanding they need and deserve, I can begin to stare at the word document with that paper I’m writing. I can draw much better – and can debate things until the cows come home.

By 5-8pm I hit another fatigue lull, but if I nap on the train home or on my sofa in the living-room, I wake up raring to go.

From 9pm – 2:30am these are my golden hours of productivity. I write everything I need to do, I notice ideas and complex issues I missed in papers during the day, I draw more in that time than I have done all day. I complete works, I come up with my bestest ideas – I learn so much new stuff in this time — I learnt how to code websites and phone apps deep in the night. I’ve started many of my projects at this time.

But it’s annoying. I want to be that well productive in the day – and ALL day.

It’s pretty exhausting at times, especially already trying to beat that fatigue that won’t shake off.

And I know I have so much to do. So how do I keep motivated as I do my PhD and all my other projects?

Over the winter holiday I read “Let My People Go Surfing” —  Chouinard’s story is of his values and what led him to start Patagonia (the best outdoors store, ever). The principles that drive his company are really his own and he is a reluctant businessman. His big focus is on quality, durability and doing more with less. He is a committed environmentalist and believes businesses should be responsible for the damage they do to the Earth. Refreshing.

Quotes I liked:
“Doing risk sport had taught me another important lesson: never exceed your limits. You push the envelope and you live for those moments when you’re right on the edge, but you don’t go over. You have to be true to yourself; you have to know your strengths and limitations and live within your means.”

&

“How you climb a mountain is more important than reaching the top.”

Before 2012, I worked so hard and made so many sacrifices, that when I thought it was all nearly over – I regretted the missing the really important things in my life. These quotes encapsulates some of the foundational lessons I learnt – or certainly felt – when I got sick, and my normal life was really hard to maintain for months and months. It drove me into the ground.

But surviving something like that, made me feel like I deserved to spend every day on vacation. But you can’t. You have to re-join the real world, and re establish yourself in some sort of way.

Now I need to be able to have a balance during this PhD. I’m finding it a bit hard. Some weeks I work insanely hard. Some weeks, I feel the guilt for not having achieved much. Maybe that’s a natural balance? But I think I’d prefer it to be more work consistent.

So in changing habits, and in hoping to sculpt something from my mess, and learning from Let My People Go Surfing values. I’m not going to spend any money on clothes, & unnecessary things like blankets and lights (which I seem to have a thing for!) I will only buy essentials such as food, and art/study stuff and train tickets – for a whole 6 MONTHS. Starting from tomorrow. This will help enable me to declutter my day, my procastination of online shopping when bored, from walking to shops and looking at stuff i don’t need. I want to begin to re-evaluate what I have.

And I need to write more.

I’ve journaled frequently in the 10 years. I  kept a streak doing it for 106 days in a row over last summer. Every single day I’d write, I’m glad I did. And yet, most days, I don’t.

And I almost never let anyone see my writing.

Multiple theorists emphasize the importance of failure. I know this, but I’m not practicing it.
In the past year, I labored over at least a dozen items I planned to post publicly. I published  only 1 or 2 good ones.
I sat down with Steven Pressfield’s The War of Art, and it drove the point home even more strongly:

Whatever work you fear most, it’s likely the most important for you to be doing.

I fear writing because I fear I have nothing to say. I fear letting you see my half-finished thoughts because I fear losing your respect and attention. Most of all, I fear wasting your time.
But I know it’ll sharpen my thinking; I know it will push me. I hope it will connect me with people who like to think about, talk about, or work on the things I’m interested in.
So I’ll do it.
I will, at least once every week or 2, post something (brief!) that’s unfinished, unready, and unworthy of your time.
Here goes…
To my mantra: Work Hard & Be Kind
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Nearly another year older: 29 things to do by next year.

Tomorrow, I turn another year older into my late 20’s.  Slowly, slowly edging ever more closer to 30. It’s crazy because I still feel 21 in my head. I still get I.D’d for booze at bars and if I’m really trying it on, I still get Teen cinema tickets at the local Odeon. 

But my life is that of an 18 year olds. I still rent, I don’t even own a wok (this is going to change), no kids,   no pension. I’m still a student, albeit I prefer researcher  now (PhD). Getting really sick in my 20’s kind of funked things up a bit. I lost time for making and meeting people and things. I lost money, and I spent a whole-lot of it when I got it — YOLOing or trying to find cures for my fatigue.

By societies standards, I’m not a success. But in my own standards (and I think this is what matters) I’m relatively happy with where I am right now.  I mean, I am alive. I get to travel, I get to do what I love every day. I get to try and make a difference. And my life is sweeter than it ever was before, because the stakes are higher. I feel time is like an old friend who helps me to see things with much more clarity. I have incredible friends & family who are there for me, every-step-of-the-way.    

As I missed New Years being sick, and as I enter the year of Copper on the periodic table: I feel like I aim to see things differently: 

glass: more sea, less broken 

music: more live, less elevator

dreams: more lucid, less fever

flies: more dragon, less horse

fires: more camp, less brush

roads: more country, less service

slides: more water, less land

light: more moon, less brake

letters: more love, less demand

sins: more carnal, less original.

Here’s 29 things I am going to do this year

1.) stare at the stars with the people I love.

When I fell sick, my first night of wide-eyed clarity was spent  staring at the milky-way on the ballfield on an island in New Hampshire. USA, thinking about all the things I haven’t done & might never get to do. Now when I look at the night sky. it shifts me back to that feeling, being part of the universe, but also grounds me. I feel the weight of time. It’s beautiful, and technically we’re just staring at the past. What better thing to share with people you love? Time travel.

2.)  make my own ice-cream

When I stayed with Tizzy & Tara in Washington DC in 2011, we drunkly came home & I really wanted some ice-cream. All they had was Lavendar and honey. I thought it would be gross – but I was SO wrong.  chomped it all and felt guilty. I’ve never been able to find this ice-cream, ever again, since. I will re-create it this year.

3.) go to the coast of italy and draw the towns from the sea.

4.) design my own typeface/font.

5.) straddle the International Date Line

6.) tell my mom I love her

7.) Play the piano 

8.) run

because who knows when you might not be able to

9.) go surfing

10.) write & perform a song

11.) grow some vegetables

easy vegetables to grow, like.

12.) get a real christmas tree at christmas

13.) go to Japan

this will be a testament, Japan’s been on the bucket list for years

14.) learn to cook more new dishes than i  have ever done before

15.) do something I’m afraid of doing

16.) ride my bike more

17.) live in a world that loves all people

we should all aim for this

18.) budget

lol

19.) have fun without technology  

20.) take nothing for granted 

21.) try and stop feeling like i’m running out of time

22.) take more 35mm film photos

23.) do more for charities and help people more

24.) People

The most important aspect of out lives are perhaps the people around us. My goal is to stay in touch with family and old friends, and to constantly strengthen the bridges built over time.

25.) finally update my damn website

26.) see more sunrises and sunsets

27.) remember that what matters most is how well you walk through the fire

28.) pay my bills & debts on time

lol

29.) laugh at the odds 

**(+ bonus which doesn’t need to be said but: 30.) Enjoy my PhD)**

Happy New Year friends

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(In)Visibility and Art [& suffering]

Today, after 9-10 days of a horrific infection, I found myself feeling human enough to do some actual work. We’re organizing a conference about art and visibility, my PhD friends and I. More info coming soon! So I started writing the stuff we need to move forward today.

But what it made me think about was visibility within healthcare, and illness, and art.

I started thinking about Greenberg ( visibility of the aesthetics of experience), – and then about  the Cubists and other Post-Impressionists perspectives being  particularly poignant for illness and suffering.

But contemporarily, how  are we and can we understand someone else’s pain or convey our own to others? How do we make sense of the nonsensical, whether the chaos of life-as-lived or the inscrutability of dying? How do we answer the questions “Why me?” and “Why now?” when we are diagnosed with disease? How do we paint what we know is there but cannot see?  These are heavy questions which lie sullen at the bottom of every action within my PhD enquiry. Modern medicine, like much pre-Impressionistic art, tried to square this circle by instituting a technical and professional gaze that filters out the ephemera of the individual in order to identify and name what is hidden by opaque bodies (see, of course, Foucault 1994).

But this is not arts aim; it’s not a reductive attempt to discover the building blocks common to all landscapes or buildings or humans or musical instruments. It’s to uncover the essence of a thing, that particular thing, in order to reveal more.

Our representations of disease may actually conceal even as they seek to reveal. We know that socioeconomics and other social determinants (e.g., discrimination, exposure to violence, lack of education and social support, etc.) are tied to health and risk of illness and disease. We also know that socioeconomics and other social determinants affect prognosis and recovery. (Read Michael M’s The Health Gap for more of this)

Although the media love to highlight the enemy on our borders threatening to disrupt our safe worlds insulated from many of the realities of danger and suffering, it is actually our capacity for self-destruction that constitutes our greatest foe: poverty, poor nutrition, lack of access to care, neglect of mental illness, climate change, and war, both declared and undeclared. But far easier to wind up a distant epidemic and see a remote danger to ourselves (while thousands die in a distant place) than address our real threats. Despite many genuine humanitarian responses from wealthier “first-world” countries, it is still clear that we have primitive protective responses (at home and abroad) that largely ignore the real wolves at the door.

As the NHS looms on a crisis that was caused my a greedy, beaurocratic , irresponsible government, and Brexit heightens tensions, and Donald Trump’s inauguration starts to truly loom ahead, I got thinking.

Thinking about  all of this, I wonder if art is our tool to help both recognize suffering but also help build bridges with communities we have trouble connecting with due to these issues.  If the digital world fosters isolation, what evokes empathy? Which of our personas do we believe in—our social media portraits or our reflections in the mirror? What are the consequences of a digitally-created society in the psyche of the global community? Art *can* cross boundaries, social class, geolocked nations. It exists in between physical, real and the social-digital world.  It links us through history, makes the other seem friendly, it can hold up a mirror when everything else seems shattered and untrue. Art explores the complicated yet timeless questions of influence, superficiality, and powerlessness.

When I was first an art-student, I remember finding and learning all about this activist art history. From Ad Reinhardt creating “communist” comics under a false name and being investigated by the FBI, to more direct examples such as the Gorilla Girls, and PAD-D groups. They made work with a political edge.  It was so exciting! I wondered about how awesome it would have been, to be growing up in such a polarized and politically difficult time and then being involved in such grassroots political activity and art being the tool, or the process.  Almost a license to get it out there and be archived for the future. But that same political drive, was also given to the artworld too – Gregory Scholette of PAD-D continues writing about art and political activism with his artwork representing his ideals and holding the artworld accountable for its Dark Matter, Reinhardt wrote lots of essays – as published in “Art as Art” with his disgust of the commercialization of art.

Of course, now I found myself, in a much different world than 8 years ago where hope resided, and people were less obvious and less aggressive with their hate. Where politically, things all felt relatively stable and fine. I have since lost my political art naivety that I had then, and I don’t feel the same excitement as I did when I first found it —- but what does remain is my gut feeling that art CAN make a difference, and my passion in the use of criticality esp within a political art canon. Art can be urgent and important and poignant.

I wonder about all of these experiences, and lessons. And I think – yeah, it’s our turn to make the invisible – visible. We are traumatized witnesses, some of us accomplices, groping about in the gap between passive outrage and mobilized action. We are both: perpetrators and victims, objects and subjects endlessly exchanging roles.

It’s our turn to show that mirror to those who can’t see a reflection. It’s our turn to help people practice empathy, to feel less powerless, to make people accountable, to stand up for what is right – and I think it’s about time the artworld got out of it’s comfort zone.

I’m not sure what that looks like for me.  Some artists are already doing it. But our Art is about changing the world, rather than study how it is. It’s not just about making things, but making things happen. There is much proof out there that our common community has not been relinquished.

Is art sufficient to the task of unpacking these contradictions that lie within our society – or should it complicate matters further? Such questions are unanswerable, but we shall see and we shall do.

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Love Is Love Is Love: Working To Make Things Better

Around 5 years ago, my life changed in a fatal kind of way. When I was in America, I was given a diagnosis that made feel like I was looking down a barrel of a gun and made me question everything in my life. This crazy plot twist, that wouldn’t have been out of place in a Tramedy, set off a bunch of things in my life. The past 4-ish years have been personally-health-awful, but yet through this difficult time this happened:

Last night I picked up my crazy amazing big prestigious award from the Houses of Commons, like some kind of rock-star. It was surreal, and I’ll probably never get another opportunity to experience something like it. But it was such an incredible evening and I met so many amazing, talented, smart, giving and generous people who work within healthcare,  specifically within radiography and oncology care. We should be so proud to have these people – and people not acknowledged working day in and out within the NHS just like them – and in our country.

It’s more than anyone could ask for and it’s an absolute rare privilege; To be recognized for trying your best to help others. I’ve never really been acknowledged before,  but I can’t help but feel heavy with gratitude to everyone who got me here, as thanked previously in many, many blog posts previously. Because this award is just representative of everyone who got me here.  There is no greater gift than being able to be part of something bigger than yourself, trying to make things better for others. And so the honour of being part of narrative alone is incredible.

Then I got home, back to the north, anxious about the U.S.A. Elections, fell asleep and awoke to Trump president-elect.

When I fell sick, I had so much angst because I felt like there was so much left to do and so much more love to give in life. I’d cry because I felt sorry for myself. And I felt ashamed even more for behaving that way, for being weak. But then on reflection I realized that the tears  flowed because they needed to. Because things were building up instead of me like a pressure cooker, and I wanted to keep moving forward.

I was crying because I wanted to live, because I was afraid of not being here.  And I was afraid of being forgotten.

So having gone through that, and 2015 UK General Election and Brexist Ref vote – I figured we need a hope-of sorts – a plan of sorts. Here’s what I’ve learnt from my few years living invisibly and wanting so bad to enjoy life again. And how Brexit, and Trump and a million refugees stuck around the world make you feel powerless and everything is lost. But

Trust me when I say this time is short & this life is both terrible & beautiful.

Resentment & anger are inevitable & sometimes are important, temporarily,  but it’s important to not take up residence in that place. I PROMISE you deserve better. Even if you voted Trump. You do deserve better.

I promise you there are people who will leave you in life, but that others will embrace you unconditionally in your brokenness.

So you go out & run fearlessly in the direction of love. You are never alone. Your tribe is out there. GO GET IT. And please keep laughing. Joy is salvation. In the darkest, lowest moments, being able to find something, anything to laugh about can save you.

We never stop. We never give up. We fight for each other and protect each other.

Living and giving kindness is the best revenge. 

The most creative challenge of our lives is learning how to approach our own inner darkness with curiosity, empathy, and friendliness.

And that’s where it’s all going to come together.

Sometimes in life, if you are very lucky, you find the grace in having it all blow up in your face.

Our jobs for the day (life): Tell the truth; Be kind & curious; Love all people with all your heart; Don’t put up with any bullshit. 

Love Is Love Is Love, we’ve had a bunch of set-back but that just means we’ve got a lot of work ahead of us but lets keep working to make things better – for ourselves and for those who are voiceless, victimised, invisible or who can’t say it for themselves. There is so much more that what unites us than what divides us.

Our work isn’t done, and we need each other and others less fortunate than us, who are REALLY struggling need us. So don’t wait to be called, because you’re already being beckoned.

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Every transformation that we are witness to changes the world, & this in turn, changes us: 3.5 weeks of lessons in PhD-kingdom

It’s only been basically 3.5 weeks of being an enrolled PhD student. And what is it teaching me?

Well, I’m being schooled,  once again.

I keep being met with questions of what I’ve done – and I try to justify my lack of products with: “I’ve been doing it for 3 weeks?”… but people want something more concrete, I guess.

At first people  told me I should be reading, and reading lots! Getting together my bibliography. That’s what I should be doing for the first weeks they said. So my first week, I diligently sat in the library and looked up interesting books and downloaded paper after paper from the library gateway on creative methodologies and healthcarec(& spent a hefty time on twitter). Then the second week rolled around,  really quickly I might just add, & other people started saying that I really should focus on the making art bit because, you know, it is a practice led PhD after all and I don’t want to get to christmas and have nothing to show for it. Too right. So I started making some really terrible pieces of parts of work/thinking process (you know, it always starts off that way, so not too worried at this stage). Then week 3 was met with that I *really* should be focusing pretty much on the REF1. which has to be submitted in literally 6 weeks now. Scary AF.

So I’ve sat and stared at my REF1 form on word for about a week now, feeling the pure weight of re-framing, of patching up the holes of my research proposal, maybe even changing it slightly, of finding out an extensive and integral and good literature list.  Of finding artists to reference and draw from, of figuring out where I sit – art? design? healthcare? sociology? anthropology? (it’s obviously all of those things, but hot damn) —  trying to get my head around my potential methodologies and the pitfalls that they entail, and figuring out how long everything *should* take me to create a plan of sorts, and lets not even talk about my issues of ethics – and my potential plans in place whilst I endure a long ethics procedure — all of this needs to fit into 1000 words. No joke. And I have insane imposter syndrome that it’s not even funny.

My head of studies told me I needed to take a few weeks to just play, to knock down these boundaries I’ve learnt/built up during the past few years. To reflect upon all of the things I’ve experienced, and frame them. To see the tensions that lie within the frameworks of healthcare methodologies and artistic/creative methodologies – how these paradigms work. How they oppress and close discussion or the opposite or even offer more opportunity.  I wrote quite a few reflections, maybe I’ll share some on here in due time.

I applied with a proposal for my first symposium talk in London(combining art and healthcare together – more info soon) and got it, showed folks how to use drawing as a research and reflective tool at the IPE conference at SHU, and I’ve got the radiotherapy annual conference in Jan to present my other design research from earlier this year. All of which I’ve started to pull together over the past 3 weeks too.

I’ve drank a lot of tea, I’ve sat and stared at the walls in my studio. I’ve moved into my city center apartment/flat.

But mostly what all of this has taught me is that when the ground shifts, the next chapter begins. Here’s what I’ve been thinking and learning and trying to tell people when they’re super confused about why I’m using artistic practice-led work to create healthcare change.

Making things can expand one’s understanding of what it means to be human. Finding the vehicles for exploring the edges of your experiences can be really, really scary but it’s a great way of transforming thinking into practice. Change is inevitable, adaptation is optional.

Every transformation that we are witness to changes the world, and in turn, changes us.

‘Making’ is a process. In comes from ‘doing’. Doing something. ‘Making’ can bring you face to face with your own agency. ‘Making’ has some of the qualities of an echo. It can travel in space and time and come back to you in the form of a feedback loop.   It helps to make something that you don’t necessarily understand. And even if you think you understand what you are making, the act of making it will change your understanding of it and you will feel yourself get bigger.

I have been exploring my own tracings, teachings, drawings, wanderings and wonderings, feelings, thinkings, questionings and assumptions ever since to better see what can happen when something opens and something else falls… out. And like all ‘critical making,’ it attempts to create a context to make tangible some of the possibilities that can drive passion and engage spirit by striving to go beyond the things we know and towards our own reckoning.

‘Critical making’ can remind us that even when we act alone—as an artist, as a designer, as a healthcare professional, or as a hermit—in isolation, we are part of a larger community.

Seeing is a reflexive process, and like an echo it can find its way back to you. Of course, it all depends upon listening. Everything depends on listening. Listening is different from hearing. Hearing can tell you which way to go. Listening can tell you who you are.

I’m having to re-learn to be diligent, and teaching myself to be better with my time, and my work. I’m practicing at staying awake and  trying to be attentive to what is elusive, fantastic, contingent, different and barely there.

I said that i was going to take every single opportunity I get as a PhD student. And I’ve attended nearly 75% of everything open to me, talk wise within my free time.

I plan on paying attention to everything. And remembering what Linda Sikora said when I feel crazily over-whelmed with all of the above.

She says that, “It’s more important to keep paying attention and to follow your attention wherever it goes, than it is to think about meaning and content, because meaning and content come from paying attention to the world.”

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A long view of time can replenish our sense of ourselves and the world.

A long view of time can replenish our sense of ourselves and the world.

I’ve been thinking about it for weeks. Every so often when campers know I’ve been pretty poorly over the past few years, they ask me how everything is. I reply with that it’s the most “normal” I’ve felt in 3-4 years.
But it got me thinking: on Returning to Normalcy … What Does that Even Mean?
The last time i worked at Sandy Island, properly, My life was in a state of mental whiplash and I barely even realized it. In barely a few years I’ve gone from being in a death spiral to staying up super late drinking wine with friends, climbing icelandic waterfalls, running for late buses. I went from planning out my funeral to doing radiation oncology and beginning to start a PhD. I’ve gone from thinking I’d never step foot at Sandy Island again, to working my longest summer contract here.
But it’s taken me to get to this summer to look back to see just how far I have come, compared to even just last year. Even in January this year. Even April.
Before going further I have to share how profoundly grateful I am to everyone. I can’t even write these words without gushing tears.
So the thought of a return to normalcy is like a warm embrace: to feel like the last few years were a mere aberration that has been rectified. I can’t explain the joy I got when my brain could feel bored and my body wanted to live again. I have about 4–6 hours a day that feel like they did before. The thought of getting to blend my social passions with community and art and social change immediately sets me to problem solving and creating again. Or the thought of unlocking a new meaningful lifestyle that I can plan for has me losing sleep piecing it together while I should be sleeping. I tweeted the other day that I’m already overwhelmed by the projects I’d like to work on now. It made me so happy to tweet it, to feel like I could be back to normal.
But how can I expect life to be normal? I’m still on a small doses of medications to help with everything from pain, to swelling, to hormone balances, to immune function stuff. As much as a return to normalcy seems the obvious goal, I’m definitely not normal now – so much pain & fatigue, still, and it just hit me I have no idea what was so great about normalcy before.
Being in the USA, seeing friends, being at Sandy Island with friends (staff and campers) has been incredible because these friends are all hard chargers, both professionally and personally. They’re exciting to be around because they are making the most of all parts of their lives and doing so thoughtfully. One of them asked what the projects were I was referencing in my above tweet, and in full imposter syndrome mode I stumbled at trying to explain what I was going to professionally do.
I constantly share that my biggest life insight is that while you have the time, optimize on the meaning you find in life.

In some rush towards normalcy and wanting to make the most of said normalcy, I find myself leaping to my old life – a life where I didn’t see my family, I made excuses not to see friends so I could just work or do less meaningful things. I told myself that I was going to do loads of things at Sandy this year, and I didn’t – as much as I wanted to. I should have spent more nights with Julz and Katy. I should have visited Anya more. I should have drank with Chris more. So many shoulda-woulda-coulda’s. Instead, I spent a lot of time trying to catch up with online stuff (such slow, at times non-existent, wifi). I spent quite a bit of time in bed – fatigue. I spent time that I have no idea where I spent the time?!
So there, Sandy Island: I‘ve been racing to get back to normalcy, racing to shed my death shroud, and I’m on the verge of disrespecting what I’ve been living through just to feel “normal.”
What is so great about normal?. Many of the years of trying to work as a freelance artist were financially crippling. The past years working freelance and undertaking clinical placement whilst feeling ill were exhausting.
Am I sick or am I better? Is a return to normalcy my goal or my loss? How can I maintain this profound sense of gratefulness for life, if I queue up in the same old lines?
Is my death shroud an exoskeleton I can to pull myself out of, instead of dragging it along?
This summer has given me the time to reflect upon this, and think out what’s next, and Sandy Island people are helping me figure this new chapter out, and reminding me just how lucky I am. I’ve never felt so loved in my life; and I am so grateful to be.
Special friends have showed me just how normal love looks. It’s not always a mad-dash to the airport, it can just be a heartfelt hug for you feeling better. It can be an incredible gift like a personalised book full of love and wisdom to help guide you when you’re not super sure what’s next. It could be a cool turtle dove as a reference to your most favourite movie ever (friends for ever — home alone 2!).
The gratitude i feel for all of this is completely over-whelming.
A pilgrim is said to carry all their back-path with them as they move forward. It is the back-path that brought us to where we are now. Without it, we cannot enter the path that lays in front of us.

So i’ve been asking myself: Can I make a future of the unknown and still be myself? Can I ever return to normal? And why do I want to?
Thanks for reading this far if you have.

Much love always, your friend – smizz x

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